Brisan and Parker Stults | Living with Niemann-Pick Type C

Posts Tagged ‘Children’s Mercy Hospital’

Last weekend we spent precious time in the ER at Children's Mercy Hospital with both Brisan and Parker. They both had a horrible cough started and on top of it had been running fevers since July 4th. The concern is if they have a high fever that maybe that could be a sign they have a blood infection? Doesn't sound fun and we were told to bring them in without question if a fever developed. This of course is in concern with their port-a-caths.

They kept us over night and allowed us to go home last Sunday. This week they have been doing better and are stable. Whatever they had was some type of virus and now seems to be gone. During this whole time we experienced the first time being asked if we had a DNR? That really threw us for a loop!

A week from this Saturday my mom and step-dad are having a fundraiser in Lee's Summit along with other friends/ volunteers. There is going to be great music and several different bands, live auction along with other items for sale on the side of the event. Food will be available.

July 24, 2010

9:00 am to 7:00 pm

VFW Hall

329 SE Douglas Lee’s Summit, MO 64063

816-524-8498

$5.00 donation at the door

So far so good for today for Mr. Brisan. Pretty similar story to Parker’s surgery but today went very smooth per Dr. St. Peter. Brisan had his port-a-cath put in just like Parker did exactly two weeks ago today (April 7, 2010).

The morning started off well. He was such a trooper when they had to stick him for his IV to give him his DDVAP & blood platelets.

Brisan is currently resting and has really been asleep the whole time since post operation recovery. He had a small nose bleed after surgery when one of the nurses went to suction his nose out with all that snot! He moved and it got him!

Thank you for all your prayers and thoughts.  We are hoping that this makes the anxiety and a piece of our life slightly better with the infusions.

What an eventful day. We have been at Children’s Mercy Hospital since 8 am. After getting a DDAVP infusion, dose of Amicar, and a first of the Stults family,  a platelet transfusion. Parker was taken back to surgery at about 1:45 pm. Mike and I talked to our surgeon, Shawn St. Peter after the placement of a Single Lumen Port-a-Cath and a Mic-Key G-Tube.

So far, almost 4 hours post op Parker is doing ok and is stable. He has had some bleeding but not anything severe. He is on some heavy duty pain meds that are attempting to help control this intense pain in his stomach and chest. So he is pretty out of it at the moment. That is a good thing. He has already tried to climb out of the regular bed twice within 20 minutes of being in the room. So we opted for a crib for his safety. He also does not understand why he has a bunch of wires and tubes coming off of him. He is on Oxygen, has Cardiac monitors, is hooked up to an O2 monitor and has several different incision sites and he is not used to them at all!

If we could ask for anything please pray for the bleedings to stop, pain to be managed, and for Parker to get some good rest while he is here. We are not out of danger yet. We will have about 12-14 days that he can still have bleeding complications from this surgery. Plus the risk for an infection as long as he has the Port-a-Cath.

This was not an easy decision to make as a parent. It will be a long, painful road the next few weeks with both Parker and Brisan having these surgeries done. However, Mike and I feel that we have to do what is best for both boys and their Quality of life vs. Quantity. We feel that this is the best decision for our boys at this time.

Tomorrow we have an appointment with Dr. St. Peters at Children's Mercy Hospital to go over whether or not Parker will get a G-Tube like Brisan has. They say it is better to be proactive when they don't really need it than before they do. The poor little man has some weird eating habits. I've nicknamed him “Hoover” because not even that vacuum could out dual Parker in an eating contest! He isn't chewing his food. Basically just inhaling and swallowing.

In neurological disorders, especially like Niemann-Pick Type C (NP-C), they have difficulty swallowing which leads to aspiration, choking, and potential prolonged meal times (can you say stressful for the family!). Sometimes a person with a neurological disease that slowly takes these rights away from us, may dread eating at all. I highly doubt Parker is dreading eating but we are glad that he still shows strong interest in it!

Unlike Brisan, Parker will take his medications orally. I remember last year when we went through this with Brisan and how after surgery things seemed to get worse for him. I know that I don't want to see that for Parker. I also personally worry that everything is so crowded and enlarged in his stomach region that if we do this surgery how will this play into things? I mean this is a pretty big deal and I'm not really ready to have two of them with one!I know they are brothers but they don't need to have two of the same “toy”.

Please keep Parker and our family in your prayers. We truly only get through the days with continued support emotionally from all types of loving individuals such as yourself. Here is a diagram of what this whole thing is!

To learn more about a Gastronomy Tube please read more here.